Re-Launch: Support Jackie's Battle with Multiple Myeloma

Climbing the ladder of education was a very difficult journey for Jackie. Beginning college as a single parent, she worked her way up to a masters in special education with an administrative leadership license. She started as a headstart teacher, and now has a job as a Setting 4 Assistant Director of Education for Northland Learning Center helping students K - 22, as well as the ALC. This is why it is so difficult for her to face the prospect of not being there for her students and her team, as she worked so hard to get there.

Everyone should go get thier yearly exams. She has always been worried about diabetes and high cholesterol, so went in to get annual bloodwork done for that. A red flag came up of being anemic which she has never been, along with red and white blood cell counts, which flagged them to do more tests, (colonoscopy, bone marrow biopsy that was incredibly painful even with anesthesia that they didn’t give her enough of, CT scan, more blood cultures) the results led her to an oncologist, where she found out her diagnosis.

She was diagnosed with Multiple Myeloma, a type of blood cancer that affects the bone marrow. Double Myeloma, also known as Kahler’s Disease is very rare. It is incurable at this time but treatable. Her diagnosis is considered high risk therefore they have put her on an aggressive treatment, as she has a TP53 depletion of a DNA marker.

A temperature of 100.4 or higher means she needs to go the the emergency room immediately. Treatments have made her immune system depleted to nearly non existant. A week into oral treatment, she had her first chemotherapy infusion. Shortly after she arrived back home, she spiked a fever of 100.9 and had uncontrolable chills/shakes/shivering. Upon arriving at the ER, she tested positive for Covid, a bacterial infection, and Sepsis. The Virginia ER decided it was in her best interest to be transported to a facility that could handle her needs better, so by ambulance she was transported to the Duluth Essentia St. Mary’s Hopsital ICU. Released on good behavior two days later.

Treatment is in three phases. Phase one is chemotherapy (there are many kinds, not all of them are scary) - this type is two shots in the stomach every Tuesday for 12 weeks. This appointment requires her to be observed for hours after the two shots (she says they’re big enough for livestock) so every Tuesday she must take a half day off of work.

Phase two will require a six week stay in Rochester while she undergoes stem cell harvesting, intense chemotherapy (this is the scary kind, she will not have a hair left on her body, and every cell in her body will be blasted) and then a stem cell transplant. She must stay in close proximity to Mayo during this time for frequent touch base and in case of emergency she is nearby. During this stay, she will have little to no energy, and will be very suseptable to infectious disease and illness. There are place like The Hope Lodge that provide lodging, but require the same caregiver to be with her for all six weeks. Although nothing is impossible, Jessica, Laura, and Wayne would like to divide and conquer. Places like Extended Stay, or Air B&B allow multiple family members to care for her, but are much more cost prohibitive. During this time she will also be unable to work.

Because this is her first year on this job, Mom has in her bank 15 sick days, and 5 Personal days. She is using three for this impromptu Duluth ICU Stay. She is trying to save them all for her six week stay in Rochester, so she can have minimal lapse in pay. However, with treatment weakening her immune system, we are doubtful she will have much left by March. There is also the cost of feeding herself away from home for six weeks, transportation from Virginia to Rochester, and a bunch of stuff we’re not thinking of yet. The drive from the Duluth hospital to her home in virginia is an hour away.

Mom is a very prideful person. She is always dressed to impress, coordinated and accessorized even when she is not feeling well. She has a great fear of pain, and hates needles. All of this has been difficult for her, for many reasons, but I fear her pride is also taking a hit.

Working in a school, although she loves her job, may not be possible for her. We all know that schools are germ ridden and incubators for the trendiest colds, flus, and viruses. The nature of her job would make it very difficult for her to work remotely from home, where she would be safer. She is trying her best to work from home when she can, but so much of her responsibilities require her to be in schools in person. She's concerned that if she looses her job, she will also loose her insurance as well as her income.

Jackie has three daughters, and two grandsons. As the oldest sibling, I feel a great responsibility to help her come out on the other side of this. I also have a great relationship with my mom, and it's challenging to watch someone you love be in pain. She loves when I cook for her, and is very proud of me. I rely on her for advice, and keep her very involved in my life. Mom is a great support to her two grandsons that Laura and Mike adopted who have high special behavior special needs. Laura calls her four times a day. She is survived by her youngest daughter, Emily, who died by suicide in 2004. Although she is greatly missed, mom said this morning that she is not ready to reunite with her just yet. She has a great will to live, and isn't throwing in the towel just yet. She has people here who still need her.

I hope you will consider supporting my dear Mom as she embarks on this very daunting battle. Anything helps, as we are just beginning this journey. Thank you for your support in any form.

-Jess